Going direct to heaven, going direct the other way

We interrupted our usually upbeat program for an important service message.

It has been suggested to me that I see things to negative, and that I “should not always assume the worst will happen”. I feel it is important to clarify my feelings on the matter, and I’m going to do this in the way that, for some reason, helps me most at the moment, which is in public. I guess it is easier to fight your demons out in the light where you can see them (and lest anybody thinks I have finally snapped, the “demons” are strictly a metaphor; I do not, rpt. not, believe in the supernatural). I would be nice if this would set the matter to a rest, but undoubtedly somebody will tell me that I am wrong to feel the way I do. Be that as it may, I wouldn’t be me if I felt any differently, so there.

Of course nobody suggested to me that I should have the wife killed. The preferred legalese phrase in my jurisdiction is “Einstellung lebenserhaltender Maßnahmen”, the cessation of life prolonging treatment. The phrase is specifically designed to make clear that the process has nothing to do at all with killing, or actively bringing an end to a life. But when I was asked to make a choice whether Siobhan should cease, or if doctors should attempt further treatment I did not feel in the mood for close semantic analyses. Siobhan had given me (as I had given to her) a legal mandate to make decisions for her if she ever were to be incapacitated, including medical decisions. A word from me and the doctors would end their efforts, and Siobhan would certainly die. With treatment, there was a chance she would live.

What should have been a no-brainer – what kind of husband would give up on his wife after a few days (over ever, really) – became a tough choice as the doctors went through their gruesome laundry list of incurred damage. Left side of the thalamus gone. Unknown amount of damage to the right side. Damage to the brain stem. Damage to the cerebellum. A lesion in the cerebrum. Rising pressure in the brain, due to inflammation, and because the ventricles of the brain had rearranged themselves so that cerebrospinal fluid could no longer escape. Fever of unknown origin.

The doctors were unable to provide any kind of guidance. In part I think they felt the hospital had already messed up by telling us beforehand that Siobhan’s surgery was a low-risk standard procedure (admittedly it was one of the nurses who had said that, not the doctors) , but mostly I presume they just had no way of what was going to happen. The only thing they categorically ruled out was a ful recovery, they were certain that Siobhan will suffer from hemiparesis in her right side; but there is a wide continuum from needing walking frames while clear of mind as a best case scenario to being committed, damaged on body and mind beyond repair, to a permanent care facility as the worst case, or anything between. They required a decision within the next 48 hours.

During those two days my mind raced in circles. There was no handle to the situation that would allow me to make a decision in Siobhan’s best interest. As you know I decided that treatment should continue, but that decision I made for my own best interest, not hers, and there is no way yet to know if I did the right thing.

The only thing that is certain is that I made her suffer a lot. I agreed to have a hole cut in the back of her skull to relieve the pressure. I agreed to have a much larger piece of skull removed from the left side of her head when the first hole proved ineffective. I agreed to have a smaller hole drilled into what remained of her skull to insert a probe that measured intracranial pressure. I agreed to have the back of her head to be cut open again, when the there was an infection to the wound. I agreed to a rather aggressive therapy with antibiotics when Siobhan developed a prolonged fever. And if you think maybe that wasn’t so bad, certainly she did not feel pain while in coma, then you probably haven’t spent forty-seven consecutive days at a hospital bed watching the contorted face of a loved one (and I really hope for you you haven’t). She did feel pain alright. Admonitions that I should not always assume the worst to happen seem rather out of place to me, because from where I am standing the situation already looks pretty messed up.

And there was, and still is, no way to tell if I made the right call. People keep telling me that, no matter how things will turn out, I could not have decided any other way. But while they are right, broadly speaking – I could not have let her die just to be on the safe side – this does not mean mine was necessarily a good decision. This is not a situation where, if things go awry, I can admit I’ve lost and be a good sport about it. My wife will have to live with the consequences of my decision.

Siobhan was always convinced that something would happen to her early in her life. That was not any kind of clairvoyance – she is as skeptical as me w/r/t the existence of yonder realms – but owed to the fact that she has been a diabetic ever since her teens, and she thought that some consequence of that disease would finally catch up with her (although by “early” she assumed her early sixties). And since I love riding that motorcycle, and we were always very much aware that there is such a thing as accidents, we talked a lot about possible consequences should anything happen to either of us. So I do not need to rely on speculations on what kind of live she would still find acceptable – I know it, from her very own mouth. She could certainly adapt to a life on walking frames, or in a wheelchair. But speech, and her mental faculties, and a modicum of mobility and independence while living in her own home are the things she could not live without, and right now there is, despite all the good progress she makes, still a danger that she ends up mentally impaired stowed away in some facility. The main reason that I have a legal mandate to end life prolonging treatment is that she trusted me that I would exercise that mandate if necessary.

But when the time came I decided that doctors should do everything in their power to save her. I did not do that for her – I did it for me. I figured that if nobody could tell me how things would end they might as well end well, relatively, and I just could not bear the thought of living without my wonderful wife. But that is ultimately a gamble – if it turns out that I made the wrong call, and that I have condemned her to a life she could not possibly want, then I would have failed her as a friend and a husband, and a trusted person. I do not know how I could ever live with that.